Creating Oregon's advance directive for health care in1989 was one of the first issues I worked on in the Oregon legislature.  My role was to assure protection of people with disabilities and mental illness in "surrogate decision-making."  The bill finally passed after many, many hearings, some contentious and emotional. 

Talking about death in public, I learned, is not an easy thing.

Four years later, Disability Rights Oregon (then Oregon Advocacy Center) played a central role in drafting a bill to create an advance directive for psychiatric care.  This bill did not touch upon end-of-life decision-making, yet fears still ran high among many consumers of mental health services that an advance directive would be used to force them into treatment and institutionalization.  Many, many safeguards were put into place to allay those fears.

Since then, I've followed discussions and studies about advance directives.  In Oregon, psychiatric advance directives are hardly ever used because doctors won't accept them.  Nationally, doctors accept health care directives less than half the time.  Studies show that white, middle and upper-middle class people are far more likely to use advance directives.  One explanation is that minority and low-income individuals are less likely to trust doctors to treat them fairly and are more likely (particularly immigrants) to believe in miracle cures.

I'm sure you know where this is leading: to the present health insurance reform debate.  I'm not going to talk about the "death panel" thing.  What more can one say?  I'm more interested in the trust thing.  Why are so many people convinced that expanding health coverage through government action is a scary proposition?  Many of these folks must have had the experience of being turned down for coverage or payment by their private insurer.  Most must have had a friend or family member denied.  Why are they not upset about that?

Perhaps one answer hearkens back to those studies of advance directive usage.  Remember that minorities and low-income folks are less trusting of professionals who they feel may devalue them.  But what if the tables were turned?  What if the main proponent for changing how health decisions are funded is an African-American with a Harvard education?  Private insurance companies, in contrast, seem to have no ethnic identities or motives other than making money.  Does health insurance reform seem like just one more threat to people who are used to being in the majority but whose complacency is being eroded by increased national diversity?

People with disabilities have always been concerned that their lives are devalued by medical personnel.  The evidence to support this fear is plentiful.  In an earlier posting, I discussed the work of philosopher Peter Singer and his proposal to treat a quadriplegic's life as half as valuable as an able-bodied person's life.  (Consider the similarity with the US Constitution that originally designated slaves as 3/5 of a human being.)  The demand of any minority population is not to be judged according to standards that dismiss its equal value.  Perhaps the demand of a majority population is to retain its perceived  advantage.

Advance directives are specifically designed to give people more personal choice in how decisions are made about their health care.  But many people who came to the legislature back in the day thought that directives would do just the opposite.  In the health insurance debate, some people feel that having more choices of coverage will eventually take away their choices.  In both cases, some feel that being given a choice means that one's choice may be coerced.  They may feel that it is better to leave these decisions to some other realm.  But that is also a choice.

It's not my job to advocate on every bill affecting people with disabilities, that would be impossible.  Every bill affects folks in the disability community in some way because we are all citizens.  DRO only weighs in on legislation that directly affects people who are most likely to be our clients.  Yesterday, as most committees prepare to shut down, there was a lot to weigh in on.

At 8:00 am in Senate Judiciary, we had HB 2441 that would allow those who sexually abuse folks with developmental disabilities to be more easily prosecuted.  This bill is getting strong push-back from criminal defense and civil liberty groups.  Also on the docket was HB 2335, a bill that we don't care about except that it is being used as a possible vehicle for a variety of amendments that could be used to save the state some money.  The "-11 amendments" would eliminate client-requested hearings before the Psychiatric Security Review Board and extend a time limit for another type of hearing.  Both of these bill did not get a hearing because of time and were set over to today.

At 1:00 pm, the Ways and Means, Human Services Sub-committee heard SB 25 that would create an advisory board for Oregon State Hospital and HB 2442 that would create a Quality Care Fund to support training and technical assistance for group homes to achieve high standards of care.  Both bills were amended to remove fiscal problems and moved to the full Ways and Means Committee.

Then, at 3:00 pm, three separate committees were hearing bills that DRO has worked on.  In House Health, SB 16 was passed after last minute negotiations with the committee chair.  The original bill allowed advance health care directives to be used to authorize in-patient psychiatric care for people with dementia.  The committee chair wanted the bill to also allow any person to receive such care, not just folks with dementia (presently, the advance directive can't be used for this purpose - you have to use a "declaration for mental health treatment").  A compromise was struck to make the change only for people with dementia but to form a work group to explore other changes.

While that was going on, the House Rules Committee was hearing HB 2853, a bill that would require information about criminal convictions and civil and criminal commitments to be sent to the FBI for a national registry to prevent those convicted and committed from buying firearms anywhere in the country.  Many changes have been made to the original bill to address concerns of gun advocates and disability advocates (an interesting alliance).  Additional amendments will be needed before the committee will act on the bill.

Not to be outdone, the House Consumer Protection Committee heard SB 731.  It would assure that people who receive public benefits that are exempt from garnishment do not have to go to court to reclaim their exempt funds.  This bill would protect many of our vulnerable clients from losing access to money that they rely upon for food, housing and other essentials.  The committee adopted the bill's "-11 amendments" and passed the bill out.  [Careful readers will note the second occurrence of -11 amendments today.  Coincidence?]  This is one of those bills that will help many of our clients in a very direct way. Many thanks to Sybil Hebb from the Oregon Law Center for her skilled shepherding.

So that's enough, right?  Well, no.  Midway through the afternoon, we learned that our #1 priority, SB 874, had run into a technical problem.  This bill would conform state law to changes made by Congress to the ADA.  It has already passed the Senate and the House Judiciary Committee.  But the Legislative Council decided that the bill has to amended.  Another bill was recently signed by the Governor that changes a section of law that our bill affects.  If our bill is not amended, it will wipe out the other bill's changes.  So SB 874 is coming back to the Judiciary Committee today to be amended.  It will then go to the House floor for a vote and then go back to the Senate for concurrence (knock on wood).  Since the bill had a close vote in the Senate, we are not thrilled by this development.  But that's how things go here at the legislature.

Here I am again at the legislature.  This time its the House Health Committee.  Senate Bill 16 concerns the question of whether an advance health care directive can be used to involuntarily hospitalize a person with dementia for the purpose of providing psychiatric treatment. 

Dr. Maureen Nash is the person who brought this issue to the legislature.  She says that there is a tsunami of people with dementia coming to Oregon as we age.  There will be a 90% increase in occurence of dementia in the first 25 years of this century.  Many may need psychiatric care.  She says that sometimes family members present health care proxies so that they can admit a loved one with dementia to Dr. Nash's hospital for psychiatric treatment.  But the lawyers for Dr. Nash's hospital (Tuality) say that the law does not allow a health care representative to place a person with dementia in the hospital for treatment.  The person with dementia is often unaware of the need for treatment.  This means a person must go through civil commitment or a guardianship proceeding.

Rep. Greenlick wants to know why the bill doesn't just eliminate the provision of the law that does not permit an advance directive to be used to commit a person to a psych hospital.  Dr. Nash says dementia is different from severe and persistent mental illness.

A citizen testifies that his wife appointed him to be her health care representative.  His wife had an early onset of dementia and he was unable to admit her to Tuality Hospital because of the exclusion of mental health treatment.  He finally obtained a guardianship so that he could make this type of decision.

Dr. Tina Kitchin from DHS testifies that she worked on the advance directive laws that were passed in 1993.  She notes that it is complicated and many different perspectives were involved.  She says that dementia was very much in mind to those who crafted the law.  The law was designed to be empowering for those who wanted some control over their lives.  She was surprised when she heard that some hospitals believe that they don't have the authority to admit someone with dementia for psychiatric care.  Recently raised concerns are being addressed by amendments.

 Oops!  I'm being called up to testify.

Well, I put in my two cents along with David Nebel who was representing the Elder Law Section of the Oregon State Bar.  Rep. Greenlick wants to get rid of the prohibition of using the health care directive to put a person in a psych hospital.  I said that this will be threatening to many people with mental illness but that if he tries to do it, he should make sure that the directive contains clear information that it may be used for that purpose.   More to come soon on this.